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Coping with side effects?

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#1 hggoble


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Posted 18 June 2011 - 02:40 PM

I have been on Gleevec for about 6 months, and am struggling with some side effects - lack of appetite, low energy, nasea and weight loss.  Can do a high protein diet but having difficulty eating enough carbohydrates.  Pastas are especially difficult to eat. Anyone have any suggestions on how to increase appetite and reduce nasea?    Has anyone found any supplements that are helpful?

Thanks --

#2 Happycat


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Posted 18 June 2011 - 03:35 PM

Honestly?  Ask about marijuana.  They give it to AIDS and cancer patients, both as palliative for pain and to stimulate appetite.  Won't do much for energy, but if you can eat more, you might feel more energetic.


#3 Susan61


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Posted 18 June 2011 - 05:56 PM

Hi:  How many  mg. of Gleevec are you on.  The basic dose is 400mg a day.  Some people split it in half instead of taking a whole pill.  You should always eat a good meal before taking the Gleevec or it will cause the nausea.  I had the nausea in the beginning, but it got better with time.  I eat a good breakfast or brunch a little later in the morning before I take my Gleevec.  A lot of people like to take their medication after their biggest meal of the day which is usuallly your evening meal.  Then take the Gleevec before they go to bed or a little while after they have eaten, and they found that to be helpful.

    I never lost weight even when I was nauseous, as a matter of fact I gained weight from the Gleevec.  You have to try different things till you find what works for you.  I hope some of this information helps you.

#4 Marnie


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Posted 18 June 2011 - 07:21 PM

Hi, hggoble. . .

Sorry to hear that you are struggling with Gleevec.  For me, I could not take it with a salad, but if I had a heartier meal I typically didn't have many problems with nausea.  Other side effects were more of a problem.  I still struggle with lack of energy, but find that getting out and doing something really helps.  It's hard to get the motivation to get up and get going, but once I'm out there, I feel a lot better.  On the down side, my bedtime has moved WAY up.  By 8:30, I'm in bed reading a book.

You might try splitting your doseage, though that didn't help me.  The only other advice I have is to eat it with a late dinner, and make it a pretty solid meal.  I do dinner between 7:00 and 8:00 p.m.

Good luck and hang in there.  You'll eventually find your new "normal" and life will get back to (almost) the way it was before diagnosis.


P.S.  Avoid orange juice. . .for me, o.j and Gleevec just did NOT mix.

#5 PhilB


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Posted 19 June 2011 - 01:38 AM

Dose splitting has already been metioned and seems to have helped a lot of people on here already.  As to Marijuana it could have been specifically designed to combat nausea and increase appetite, but is unlikely to do much for your low energy!

One simple thought is that if you are struggling to get through a large meal (eg a bowl of pasta) you may find it much easier to eat a starter, a smaller main and then a desert. The appetite dulls much more quickly when eating a lot of the same thing than when eating lots of different things - especially if they are have diverse flavours.  Instead of having 4-5 oz of pasta try something like a mozzarella, tomato and basil salad with bread to mop up the dressing, 2-3 oz of your pasta and then a portion of tiramisu to finish.  A glass or two of wine can also help calm the nausea.

Another effective natural remedy for nausea is ginger, so if you are in need of nausea relief plus carbohydrate you could do a lot worse than a slice of Jamaica ginger cake or a couple of ginger nut biscuits.

Hope this helps


#6 hannibellemo


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Posted 19 June 2011 - 08:50 AM

I don't know about you, hg, but I was definitely salivating after PhilB's suggestions on things you could try and eat! All those favor in of PhilB writing a cookbook, say 'aye'.  Aye!


The thing about mj is it probably won't increase your energy, but then, you won't really care about that any more either! 



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#7 janne



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Posted 19 June 2011 - 10:10 PM


I agree....thinking maybe PhilB should plan on having us all over for dinner some night. It all sounded soooo good ! 

Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

#8 CallMeLucky


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Posted 20 June 2011 - 11:48 AM

6 mo mark seems to be a tough time, I know it was for me.  At 12 mo, things are getting better.  I suspect it will continue to cycle, but at least it seems like the cycles are getting further apart.  So hopefully you will be feeling better as things go on.

You are caught in a bad cycle right now with everything you wrote about playing into the other.  Nausea causes loss of appetite which causes weight loss and low energy.  So the first thing you have to do is fix the nausea, because if you can't get food in you aren't going to fix the other issues.  You should speak to your doctor about the nausea.  I am not a fan of taking meds and don't like taking anything more than I need, but when it comes to nausea, you have to do what you have to do.  They have very effective drugs for nausea related to cancer treatment and you should not suffer.  Once you get that going then you need to get your food intake up.  Focus on calorie dense foods, read this article http://www.livestron...ie-dense-foods/ and do an additional Google search on 'calorie dense foods'.  Calorie dense foods are exactly what they sound like and let you get in a lot of calories with smaller portions.  You can also try to supplement with shakes like Boost and if you can tolerate it, treat yourself to a vanilla milk shake or something like that.  You don't want to live on milk shakes but temporarily you need to keep your calories up.

The next step, and I know you are going to think I'm crazy, but the next step is getting in some exercise.  You have to get yourself moving.  I find the more sedentary I am, the worse the fatigue and muscle aches are.  You have to push yourself to get moving.  You don't have to run a marathon, just try to start off slow with 10-20 minutes of exercise each day and try to build from there.  You can do some yoga, or basic callisthenics with stretching.  Just try to keep moving.

But first and foremost get the nausea under control.  Talk to your doctor, consider changing the time of day you you take your pill.  I take right before bed with small cup of oatmeal and a really large glass of water.  Force the water down when you take the pill, it helps.  Keep drinking throughout the day to make sure you are hydrated.  If you are unable to find relief, then talk to your doctor about switching to another drug, but I think there are things you can do before you get to that point.

Best of luck....

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#9 Susan61


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Posted 20 June 2011 - 05:00 PM

Hi Marnie:  The one thing that you just said about getting the energy to get moving, but once you do your fine.  This happens to me all the time, and I sometimes think its more depression that I just do not feel like making the effort to get in gear to go do something.

It happened to me today.  I felt very fatigued and had those stupid foot cramps that I get.  I needed to get to the store for some groceries.  I just pushed myself to go do it, and once I got out I was fine and completed everything I needed to do.  I do not go to bed early.  I usually end up dozing well I am watching one of my programs, and then I am wide awake to watch my 11:00 news and even some Jay Leno before I finally go to bed.

I guess we all handle things differently, but as long as it works then do it your way.

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